The Best Unorthodox Advice From My Doctor
When you’re living with a complicated disease such as SMA, it’s half the battle to have a knowledgeable and trustworthy medical team helping to manage everything. I’ve always been fortunate in that respect.
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
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Defining ‘good health’ on my own terms
Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a…
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How the Formula Shortage Has Affected Me as Someone With SMA
Whether it has directly affected you or not, chances are you’ve heard about the formula shortage happening in the United States right now. It’s a serious issue, one that has people…
Avoiding COVID-19 Exposure Is Like a Game of Dodgeball
While most of my elementary school days are a bit fuzzy in my head, lately I can’t stop thinking about how we used to play dodgeball during gym class. Our class would split into…
Overcoming Roadblocks to Chase My Dreams With SMA
For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved…
Adapting to My NJ Feeding Tube
Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ…
Finding Somewhere Between Burnout and Balance
I’ve been having trouble coming up with a topic for this column. Perhaps I shouldn’t open with that, but stay with me here. At first, I blamed it on writer’s block. Other than my…
I Am Here, and That Is Enough
As I prepare to write my first column in over a month, a nasojejunal tube is pumping food into my small intestine, reminding me I’m not out of the woods yet…
Facing New Challenges Gives Me Clarity and Control Over My Life
For nearly two years, my days have been filled with health problems. Well, I’ve always had health battles to deal with, but in recent years, they seem to have amplified, or…
Staying Organized Helps Me Simplify Life With SMA
Before I dive into this column about how the art of organization keeps my life balanced, I believe a disclaimer is necessary. After all, no matter the number of “Queer Eye”…
Reflecting on a Year Gone By Brings Me Gratitude
Like many others at the turn of the year, I enjoy setting aside some time to reflect on the past 365 days. I’ve never been the goal-setting type at the start…
Cherishing Togetherness During the Holidays
Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the…
Being Rare Is All I’ve Ever Known
If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this.
